Busy, busy, always busy

This last week I have been trying to carry on at a normal pace, almost as if I hadn’t had implant surgery 2 months ago.  So I attended a governance half day conference, started up the year 6 club I run, attended a meeting at each of the schools where I sit on committees, observer-the-winters-tale-photo-by-johan-perssonsaw Kenneth Branagh’s A Winters Tale live at our cinema ( long but a fantastic cast – particularly the young stars, Tom Bateman and Jessie Buckley) and attended St Thomas’ outpatients.  Needless to say, I completely overdid it and then made a birthday cake for my nephew, which we delivered to Witney at the weekend.  I had forgotten what germ pools children’s birthday parties can be, but after time spent in the soft play barn my brother, Duncan and I have all gone down with the lergy.  Only my sister in law has escaped….so far!

My appointment was in the joint Pain and Urology clinic with a view to positioning an additional electrode lead to attempt to give my bladder back some sensation.  We have decided though to leave well alone at the moment, as there are no guarantees that a further procedure would not cause lead migration and electrode movement for the existing implant.  Equally there is no guarantee that the procedure would even help my waterworks!  No brainer…..so I must now try to retrain my brain/bladder,  otherwise known as potty training.  Of course this should become easier as I continue to reduce the drugs as another side effect of strong opioids is retention.  http://www.medscape.com/viewarticle/763040_4

Where does gain morph back into pain?  I saw a different CNS on this occasion and was told that I’m doing “brilliantly”, but that I’m probably expecting too much of myself too soon.  This was the first time that we were told that it takes a good 6 months for the body to adjust and for the person to become adept at using the scs.  All my concerns about increasing levels, struggling to cover my foot pain in the cold and leaving the stimulator on for too long were swept aside.  I left feeling a great deal happier.

I met a young mum at the weekend – also at the birthday party – who had also received a scs recently.  Funny really, after my appointment for a trial in bladder stimulation, as she has a sacral stimulator for function rather than pain control.  She is in the forces and told us how she has served in Afghanistan and Iraq, yet it was the birth of her first child that has left her body with irreparable internal damage. images (5) The stimulator has been implanted to help her regain some function of her bladder and bowels – it seems almost beyond belief that in a developed country a young woman can still experience this level of damage and dysfunction as a result of childbirth.  I am full of admiration as not only has she had another child, but she remains in the forces whilst juggling life as a wife & mum of 2 small children, living with this unseen disability.

As for me, well a hacking cough, headache and fever do not combine well with back pain.  In fact the scs has almost made my back and leg pain even harder to cope with at times today.  I wonder why this should be?  I think I’ll decamp to the student’s bedroom tonight (keep encouraging him to take more of his things to his uni flat, but still he comes back.  Must change the locks…….kidding, maybe) as we haven’t quite got our coughing in unison yet and will toss & turn all night for the wrong reason!images (6)

Those little things we don’t mention

This week I should have been back at Tommy’s for an appointment at the Joint Pain and Urology clinic – it was cancelled due to a shortage of doctors.  I’ve touched briefly on one of my pages about additional problems caused by nerve damage in the back, but even for para & tetraplegics with the very worst back injuries, as a society we really don’t like to mention the more personal bodily & sexual functions that can fail as a result.

It stands to reason that when a back is broken and a spinal cord severed, that any part of the body that functions from nerves below this point will no longer work properly.  So equally if nerves are damaged beyond repair, bodily functions become abnormal too.  More of this on a “page”, but when I was seen last Christmas for the first time at St Thomas’, Dr Palmisani was the first consultant who took my comments about my bladder seriously.  So seriously that he set the wheels in motion for a urology referral, to check whether I had the dreaded female stress incontinence or something linked to my back.  I knew it wasn’t S.I. – in my experience many male doctors assume that any woman with children will have a damaged undercarriage from childbirth – “I’ve had 3 C sections” I told him “my undercarriage is intact!”.download  I think that I already knew what the problem was – lack of sensation, going all day with no urge to “pee”, UTIs and then being unable to go.  “It’s your age” friends have said, to which I thought “I’m not that old!”  But earlier this year I was seen at Guy’s by a sympathetic female urologist, who immediately said that my symptoms were classic for the level at which the nerve damage is. She also mentioned that there are 3 professions who develop an ability to hold on for long periods of time – bus drivers, cabbies and nurses – so I was already half way there. The bladder stretches beyond normal capacity because the nerves no longer signal that it is full to the brain.   I believe the non technical term could be “baggy balloon bladder”.images

The tests that I have undergone I will detail on a separate page – not everyone will want to know! – but at least with the indignity of childbirth you walk away with a baby at the end; after this indignity I just walked away with a box of catheters and a lesson in intermittent self catheterisation!!  When I had the scs trial, Dr Palmisani suddenly put it to me that he was thinking of speaking with his urology colleague with a view to using an electrode or two to stimulate my bladder……it all sounds slightly experimental and unfortunately the different specialities weren’t able to link up before the stimulator was implanted, but it could mean that somewhere down the line there may be more surgery, a tweaking of my implant programme and a buzzing bladder!tumblr_n5hn3yEnV41t7pikho1_1280

Final thoughts go to my mate Jean who has had her full implant today………